The management of adults with coeliac disease in primary care

Transcription

1 The management of adults with coeliac disease in primary care

2 The purpose of this document is to assist healthcare professionals who are responsible for the diagnosis and management of patients with coeliac disease. The document supersedes PCSG guidelines on: Decision points in the management of adult coeliac disease in primary care Follow-up care of adult coeliac disease Introduction Coeliac disease is a chronic, permanent and if untreated, potentially life-threatening condition. In coeliac disease, the mucosa of the small intestine is damaged by gluten, a protein found in wheat, rye and barley. A similar protein in oats may cause damage in people with severe sensitivity to gluten. The damage to the small intestine results in the reduced ability to digest and absorb food and causes malabsorption of essential nutrients such as vitamins, iron, folic acid and calcium. Key facts about coeliac disease Coeliac disease affects as many as one in 100 people in the UK 1,2 [C] The only treatment for coeliac disease is a strict, life-long gluten-free diet. Effective management therefore relies on regular follow-up of patients to ensure strict adherence 3, 4, 5 [D] Untreated coeliac disease often results in unnecessary morbidity 6 [B] including: Faltering growth in childhood 7 [C] Osteopenia 8 [C] Osteoporosis 9, 10, 11 [C] Development of autoimmune disorders 12, 13, [C] Malignancy 14, 15 [C] Anaemia 6, 16 [B] Symptoms Coeliac disease is often undiagnosed or misdiagnosed in general practice unless the condition is actively considered. Coeliac disease should also be considered and if necessary discounted before a diagnosis of Irritable Bowel Syndrome is made 6. Coeliac disease should be considered in patients presenting with: Iron or folate deficiency anaemia Tired all the time ( TATT ) or chronic fatigue Unexplained diarrhoea Abnormal levels of dental decay Persistent mouth ulcers And particularly if the patient also has: Family history of coeliac disease Type 1 diabetes Autoimmune thyroid disease Osteoporosis Infertility Unexplained neurological disease 2

3 Diagnosis Initial diagnosis is by means of a simple blood test for gliadin antibodies. Endomysium antibody (EMA) and tissue transglutaminase (TTG) are non-invasive tests that provide a simple means of screening for coeliac disease 17 [C]. The EMA test is the initial screening test of choice. It may, however, be negative in 2% of people with coeliac disease who are IgA deficient. Therefore consider requesting an IgA level at the same time. TTG is also useful as a preliminary screening step for coeliac disease For patients with an uncertain diagnosis, test by EMA after six weeks on a diet which includes four slices of normal bread per day for a minimum of two weeks. If the result is positive then intestinal biopsy should be offered 3 [D] Following a positive EMA test, a definitive diagnosis can be made by patient referral to a gastroenterologist for a small intestinal biopsy Management Once diagnosis is confirmed, coeliac disease is managed by following a strict gluten-free diet which should resolve many of the symptoms and improve the patient s health outcome. Benefits of long-term adherence to a gluten-free diet Effective management of coeliac disease relies on regular follow-up of patients to ensure strict adherence to a gluten-free diet 3, 4, 5 [D]. Other reasons to ensure adherence include: The risk of developing the long-term complications associated with coeliac disease, as previously mentioned, is likely to be reduced and the individual is likely to return to full health 8, 10, 15, 18 [C] Almost 50% of all coeliac patients have an inadequate energy intake, and 11% have an inadequate intake of calcium and vitamin B6. 80% of patients with coeliac disease have an inadequate intake of vitamin D 19 [C] Regular follow-up visits to monitor adherence by a health professional has a positive impact and helps the patient maintain a gluten-free diet 20, 21, 22, 23 [C] Clinical monitoring of adherence to a gluten-free diet Serological tests to measure endomysial and tissue transglutaminase antibodies are an accepted and reliable marker for dietary adherence 17, 24 [C] A small intestinal biopsy should be performed four to six months after initiating a gluten-free diet. Improvement in the villous architecture of the small intestine would be expected 3

4 Follow-up Patient adherence with a gluten-free diet is poor; ranging from 45-87% 20, 21 [C]. Good dietary adherence is aided by the ease with which patients can obtain appropriate amounts of gluten-free products on prescription 25 [D]. Patients should therefore be followed up throughout their lifetime so that the primary healthcare team can ensure long-term adherence to a gluten-free diet. Regular follow-up is also an opportunity to provide patient-centred care that is sensitive to the individual s circumstances. Frequency After diagnosis, the patient should be reviewed at the hospital gastoenterology clinic after three months and six months to ensure that they are making satisfactory progress and managing the diet Pregnancy is a particularly important time for patients to be reviewed If the patient is well, they should then be reviewed annually in primary care or sooner if problems arise Organisation Create a database of coeliac disease patients to facilitate recall and audit Use a template to record clinical data in a standardised way, in order to facilitate audit and research Have a named person who will have clinical and administrative responsibility for the service The service should be audited annually: audit standards may include a number of patients who have recorded evidence of: Compliance with a gluten-free diet Nutritional status Body mass index Osteoporosis assessment Annual assessment tests The annual assessment should involve assessment of, and motivation towards, strict adherence to a gluten-free diet. The prescription should be reviewed to ensure it is appropriate (see Table 1) 26. Development of long-term complications should be monitored. Coeliac disease status Measure weight, height and body mass index 5 [D] Assess symptoms; bowel function (stool frequency, consistency, blood in stool) 5 [D] Conduct investigations: haemoglobin, red cell folate, serum ferritin, serum albumin and alkaline phosphatase. Patients with coeliac disease who adhere to a gluten-free diet often consume inadequate intakes of folic acid and iron 19 [B] Assess gliadin, endomysial or tissue transglutaminase antibodies to monitor significant dietary gluten ingestion 17 [C] Conduct routine blood tests into possible nutritional deficiencies ie calcium, vitamin D and B12 3 [D] 4

5 Disease prevention: osteoporosis risk assessment and management Bone mineral density should be measured using dual x-ray absorptiometry (DEXA) at the time of diagnosis. The test should then be repeated: At the menopause for women At the age of 55 years for men At any age should a fragility fracture occur Advise regular physical activity, reduce smoking and alcohol consumption 27 [B] Include a calcium supplement if required 27,28 [A] Vitamin D supplements can be prescribed if the patient is housebound [D] Hormone replacement therapy and biphosphonates should be considered if the patient is osteoporotic [D] Because there is some degree of splenic atrophy in most patients with coeliac disease, it can be sufficiently severe to cause peripheral blood changes in about 25%. Patients should therefore be considered for: Vaccination against pneumococcus and haemophilus influenzae type b [D] Vaccination against influenza [D] Guidance about the increased risks attached to tropical infections eg malaria [D] Life-long prophylactic antibiotics are not recommended [D] Management of associated medical problems Discussion of familial risk if required. First-degree relatives of people with coeliac disease have a 1 in 10 chance of developing the disease and should be assessed if they develop suggestive symptoms The role of the primary healthcare team GP The GP can ensure that: At least the recommended minimum monthly amount of gluten-free products is prescribed to enable the patient to adhere to a balanced and healthy gluten-free diet (see Table 1) 26 [D]. Patients have varying requirements for gluten-free foods depending on their age, gender, occupation and lifestyle The patient is reviewed annually with or without the input of the gastroenterologist and/or dietitian, depending on the needs of the patient 5

6 Practice nurse The practice nurse can: Provide good, sensible, practical advice and refer to the dietitian and/or GP as required Assist and support patients in the adherence to a strict gluten-free diet Monitor the prescription of gluten-free foods and anthropometry (weight, body mass index) Arrange blood tests Provide a first point of contact for the patient between medical and dietetic appointments Dietitian The dietitian has an important role in follow-up care by: Ensuring a balanced, varied gluten-free diet Reviewing the dietary needs regularly and recommending changes to the prescription if required (this will require input from the GP) 26 Assessing the nutritional status Monitoring the weight and body mass index Referring to the GP if problems arise Discussing Coeliac UK membership Advising on the use of Coeliac UK s Food and Drink Directory Providing general advice on food labelling Pharmacist The pharmacist can: Input to the prescription needs of the patient 26 [D] Provide general advice and support to the patient Liaise with the healthcare team managing the patient Referral to the gastroenterologist Referral should be considered if there is: Poor response to the gluten-free diet Weight loss on a gluten-free diet Blood in the stools Onset of unexplained abdominal pain Abnormalities in blood results Other clinical concerns Useful sources of information Gluten-free foods: a prescribing guide. February 2004 (available via local PCT and PCSG) Coeliac UK. Primary Care Society for Gastroenterology. British Society for Gastroenterology. 6

7 Table 1: People with coeliac disease: minimum monthly gluten-free food prescription requirements 26 Age group Suggested no. Example minimum monthly prescription (items can be interchanged units per month eg bread mixes can be interchanged with rolls or loaves) Child 1-3 years 10 4 x 400g loaves of bread (or 2 x 500g mix suitable for making bread) 2 x 200g biscuits Child 4-6 years 11 4 x 400g loaves of bread (or 2 x 500g mix suitable for making bread) 2 x (2 x 110/180g) pizza bases 3 x 200g biscuits Child 7-10 years 13 6 x 400g loaves of bread (or 3 x 500g mix suitable for making bread) 1 x (2 x 110/180g) pizza bases 2 x 200g biscuits Child years 15 6 x 400g loaves of bread (or 3 x 500g mix suitable for making bread) 2 x (2 x 110/180g) pizza bases 3 x 200g biscuits Child years 18 6 x 400g loaves of bread (or 3 x 500g mix suitable for making bread) 2 x (2 x 110/180g) pizza bases 4 x 200g biscuits 2 x 500g flour mix Male years x 400g loaves of bread (or 5 x 500g mix suitable for making bread) 1 x (2 x 110/180g) pizza bases 2 x 200g crackers/crispbreads Male years x 400g loaves of bread (or 5 x 500g mix suitable for making bread) 1 x 500g cake mix Male 75+ years 14 8 x 400g loaves of bread (or 4 x 500g mix suitable for making bread) 1 x 500g cake mix Female years 14 8 x 400g loaves of bread (or 4 x 500g mix suitable for making bread) 1 x (2 x 110/180g) pizza bases 2 x 200g crackers/crispbreads Female 75+ years 12 6 x 400g loaves of bread (or 3 x 500g mix suitable for making bread) 1 x 500g cake mix Breastfeeding Add 4 units 1 x 400g loaf of bread 3rd Trimester pregnancy Add 1 unit High physical activity level Add 4 units 7

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